tag:blogger.com,1999:blog-45159660917824357222024-02-19T22:08:35.302-08:00The Autism BureauAnonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-4515966091782435722.post-85163705696992131312014-09-27T09:08:00.001-07:002014-09-27T09:08:48.834-07:00autism warrior momma facing cancer needs our help<div class="paragraph" style="text-align: left;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0pJejPgWQhuqKwN08XMS78zl-AdZVjCo0gMV9DYqY4pfI7UVXKzbZ4Wx6Ts_rB3mdLwwU9kr_QYN8_8mYe6Yc4tIjg7FASO5MHE95DTmsAcraFs2xBvtLho0x8aTGs3bR2Gf4K7XU5y7v/s1600/mel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0pJejPgWQhuqKwN08XMS78zl-AdZVjCo0gMV9DYqY4pfI7UVXKzbZ4Wx6Ts_rB3mdLwwU9kr_QYN8_8mYe6Yc4tIjg7FASO5MHE95DTmsAcraFs2xBvtLho0x8aTGs3bR2Gf4K7XU5y7v/s1600/mel.jpg" height="320" width="320" /></a></div>
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<span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Courier New", Courier, monospace;">this is melanie baldwin. melanie is a strong member of
the autism community. she is also known as "booty kicker" with the
thinking moms revolution, but her most important job is being mother to luke. <span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="mso-spacerun: yes;"> </span>luke is
severely affected by autism and as most of you know this means he requires
round the clock care. </span></span></span></div>
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<span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span><span style="font-family: "Courier New", Courier, monospace;"> </span></span><br /><span style="color: #333333; font-family: "Courier New"; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Courier New", Courier, monospace;">having
once beaten breast and bone (hip) cancer; she now suffers liver, spine, and
bone cancer in her other hip.</span></span></div>
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<span style="color: #333333; font-family: "Courier New"; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Courier New", Courier, monospace;"></span></span> </div>
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<span style="color: #333333; font-family: "Courier New"; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="color: black;"><span style="font-family: "Courier New", Courier, monospace;">melanie and her family need our help. please visit her </span><a href="https://www.giveforward.com/fundraiser/x4v5/melanie-hamilton-aka-booty-kicker-thinking-moms-revolution?utm_source=facebook&utm_medium=fb_share_send&utm_campaign=dashboard_supporters&og_action=hug&t=3"><span style="font-family: "Courier New", Courier, monospace;"><strong>give forward</strong></span></a><span style="font-family: "Courier New", Courier, monospace;"> </span></span></span><span style="color: black;"><span style="font-family: "Courier New", Courier, monospace;"><span style="font-family: Courier; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">page to consider a donation, help share, and leave a
comment of love and support to help melanie.</span><span style="font-family: "Times New Roman","serif"; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"> </span></span></span></span></div>
<span style="color: #333333; font-family: "Courier New"; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span></div>
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<span style="font-family: "Courier New", Courier, monospace;"></span> </div>
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<span style="font-family: "Courier New", Courier, monospace;">the autism bureau sends love and support to melanie and her family. please give as any amount is helpful.</span></div>
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<span style="font-family: "Courier New", Courier, monospace;"></span> </div>
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<span style="font-family: "Courier New", Courier, monospace;">thank you</span><br /> </div>
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Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com0tag:blogger.com,1999:blog-4515966091782435722.post-10198387292930602242014-02-24T00:34:00.002-08:002014-02-24T00:36:08.767-08:00Mito Madness<br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">dear bch,<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">your name is eerily similar to bcw, but alas, you are a beast
of a different color. you both steal children, but you seek to do it right out
in the open. bcw is a sneaky evil bitch. if i had my way, you would both be six
feet under, back from whence you came. the laws, the very ones you violate
without consequence to you, prevent me from furthering my wishes into a
makeshift plan. aaaaaaaaand....that’s not my style. i’d rather inflict the same
seething misery you inflict, unto you, over a much longer period of time while
i watch you suffer. think the movie seven. <o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">let’s review. teenage girl has already been diagnosed with
mitochondrial disorder, under the care of one of the world’s leading
specialists for said disorder, dr. mark korson, from tufts medical center. you
don’t need a link, he really is that well known.<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">chief of the program, director of the clinic, this leading
physician had already diagnosed this girl’s sister and was treating both of
them for mitochondrial disorder. girl becomes ill and is brought to your
emergency room by parents seeking health care for her. they went to your
facility at the request of one of her other physicians who recently had moved
to your health care institution (light on the health care, heavy on the
institution.) while there, she was not examined by that physician, and
subsequently removed from parental custody and diagnosed with a psychological
disorder. her treatments for mitochondrial disease, including a
gastrointestinal intervention and her “vitamin cocktail” were discontinued. i
put the vitamin cocktail in quotations as it has been presented, however, any
parent with a kiddo on the spectrum or with mito, in the free world, knows that
it is the standard of practice for treating mitochondrial disease. google it.
not brain surgery. i digress. child is removed from parental custody, placed in
a locked psych ward with extremely restricted visitation by parents and left
there for.....wait for it.....a year. twelve months. during which time, child
protective services has not appointed a child advocate to her case. multiple
court dates, the patient’s own diagnosing physician testifies in court, and
yet, the child remains in custody of the state. judge orders a child advocate.
sure, because that’s really helpful now. child’s condition deteriorates as she
is not receiving treatment for her already diagnosed complex multi-system
disease, and therefore is suffering, decompensating and her life is in danger.
we don’t know what psychotropic medications the physicians “overseeing” her
care are prescribing, so they may be contraindicated for her with her metabolic
insufficiency and actually adding to her already tenuous health status. in
other words, they could be killing her. now, to complicate matters, the judge
seeks to put a gag order on the parents just as this case starts to get some
press. (hmmmm.....interesting. because i’m pretty sure if you stole my child and
then tried to kill him, me talking about it would be the least of your worries,
however, her parents are much better citizens than i.)<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">now...i have to say it. blessed be the child’s parents who
have not already sold every last possession in order to raise enough money to
hire some black ops style recon crew to bust their child out of there and then
escape with their family to another country, killing the physicians and cps
workers with stray bullets, on accident in the process. however, if that’s the
plan, there’s a few overtime shifts with my name on them and a modest size
donation. but because her parents aren’t murderous lunatics, like yourselves,
they have chosen the righteous path. they have complied with every cockamamie
stipulation put unto them. right up until the point where her dad spoke on a
national news channel violating a gag order that was based on some law made up
in your own head that removes a person’s freedom of speech if said freedom of speech
discloses the kidnapping, drugging and violation of civil rights, and criminal
activity that you, and the judge, sanctioned. but....only in that
case....otherwise,speak away.<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">now, i thought of including the diagnostic criteria here for
the psych disorder you picked, somatoform disorder, but really what difference
does it make. we both know it’s bullshit. if you look it up for yourself you
can clearly see that in order to meet the criteria the patient would have to be
void of any other known medical condition that could cause the same symptoms.
this child went to the emergency room for fluid resuscitation during a flu-like
illness, a very expected treatment for a child with mitochondrial disease, and
was kidnapped, locked against her will, denied medical treatment, and drugged.
locked in seclusion. this case alone, violates so many rights and laws meant to
protect not only patients, but people in general i am bewildered as to how it
could go on for so long. i know we all are. and yet it did and it does. here’s
the even bigger implication. after this case, what parent, in their right mind,
would willingly take their child to the emergency room for treatment of mito
symptoms from now on? bch has single-handedly denied medical care, based solely
on fear, to thousands of children across this country. this was not some
obscure disease with only one physician from some unknown hospital or private
practice physician with his own ideas. this was a well-known, well documented,
previously diagnosed disease by a leading physician in our country from a
well-established big name medical center and university. what could you
possibly tell a parent, now, to convince them that their child will not suffer
the same fate? what‘s the outcome of that? a mitochondrial crisis during illness
can be fatal. how can we, as parents, be asked to be in that position? take
your child to the hospital to save his life, but risk losing him and having
treatment withheld and possibly end his life because of it?</span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">if i went out tonight and drank and smoked some crack and
robbed a gas station and on the way to jail told the police i was having chest
pain, they would take me to the emergency room. and i would get a chest pain
“work up” to make sure my sorry ass wasn’t having a heart attack. and if i was,
i would get treated. but at no point would they lock me in a psych ward and
drug me. although it sounds goofy, it really does happen. because criminals,
and drug addicts know the two complaints that will buy them a trip to the er
and quite possibly an admission. chest pain and abdominal pain. swallowed some
batteries...er. ate some glass...er. swallowed some razor blades...er. crushing
chest pain after snorting that last line...er. so, i mention this to demonstrate
two things. one, crack heads get great health care and kids with mito don’t.
and two, some people just know how to work the system. <o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">wadda mean?<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">well, just after i got done thinking to myself, why would bch
do such an egregious thing? i mean, we all know we (parents with kids who have
made up medical diagnosis) won’ t stop until there are criminal charges filed
and someone’s sorry ass is in jail where they may or may not fall on a knife.
then i saw this...</span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">“children who are wards of the state may be included in
research that presents minimal risk…or greater than minimal risk with a
prospect of direct benefit.”<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">...posted on the blaze. and i started to think. because,
probably, this policy is present at many, many institutions and it’s just being
publicized because of this case. but it reminded me of this frickin douchebag,
tool...<o:p></o:p></span></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><a href="http://www.kennedykrieger.org/patient-care/faculty-staff/lee-wachtel"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.kennedykrieger.org/patient-care/faculty-staff/lee-wachtel</span></a><o:p></o:p></span></div>
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</span><br />
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<span style="line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">and how part of her research includes denying children who
are autistic and have severe health problems, adequate health care and
re-naming it “catatonia” so it can fit into her research protocol where kids
who clearly have gastrointestinal disease get shocked with electroconvulsive
therapy instead of getting treatment...</span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">dr. wachtel is also pursuing -- with
colleagues at kennedy krieger institute -- the combined usage of
psychopharmacological and behavioral treatment modalities in the resolution of
severe problem behaviors, such as self-injury and aggression, in children and
adults with various forms of developmental disabilities.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">(note
to self…..to avoid incarceration in a federal prison do not ride an elevator
with this woman where there are no cameras)<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">and
then it occurred to me that possibly there’s a research protocol going on that
we just don’t know about. hence the long hospitalization. only recently has
this child been moved to another facility, which is strictly for psych
treatment. and in order for her participation in the research protocol to be
completed (we,as autism parents know about how if you pull your kid out of the
research protocol half way through, they can’t use your shit...we’re just smart
like that), she had to be kept inpatient for that long. because, honestly, does
anyone stay inpatient in acute psych for a year? no. we all
know that doesn’t really happen. they would have looked for someplace for her
much sooner...ya know...if her parents didn’t have a problem with all the illegal
stuff, and abusive nature of the program and all. <o:p></o:p></span></span></div>
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</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">so
what do we do now? how do we reconcile this most unbelievable and tragic chain
of events that started with parents bringing their sick child to the emergency
room for emergency treatment? well...there is only one thing we can do. pray. <o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that this child remains stable enough until her parents can rescue her from the
oppressive violation of her being, perpetrated, willfully by individuals
employed by your healthcare organization.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that the judge sees that he has done nothing to help this child and is risking
her life by keeping her from her parents and her doctors.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
when those physicians and psychiatrists lay their heads down at night that they
wake up in the depths of hell, suffering every moment for all of eternity.
nothing they could ever do good, can undo the bad they have already done.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that all those parents scared to bring their sick kids to the doctor and to the
emergency room, overcome their fear and know that not all doctors are bad, and
some really do care. because the alternative, can be devastating.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that Jesus will watch over this child and keep her safe until she can be saved.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that other families come forward and tell their stories of their children so
that one more child can be saved from this travesty.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that every person that reads this horrendous writing will say a prayer for this
child, and maybe pick up the phone and make a call, or sign a petition, or make
a donation to help this child.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">lastly<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i pray
that justice will be served. <o:p></o:p></span></span></div>
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</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">amen.<o:p></o:p></span></span></div>
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">bch,
you may not violate every patient right, parental right, civil right, and human
right because you feel like it. because you have a big name, or a judge, or
cps, or a research protocol. these are people, this is a child. and you have a
legal and ethical obligation to treat her medical conditions, preserve her
rights, and her parent’s rights. <o:p></o:p></span></span></div>
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</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">you
will be held accountable.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span lang="EN" style="line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">regards,<o:p></o:p></span></span></div>
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</span><br />
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<span lang="EN" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: Arial; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;"><span style="font-size: small;">mrs. r<o:p></o:p></span></span></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com0tag:blogger.com,1999:blog-4515966091782435722.post-9946139597129157832013-10-08T21:34:00.001-07:002013-10-13T19:54:18.482-07:00Public Comments for IACC<br />
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">october 8<sup>th</sup> 2013<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">good afternoon<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">my name is jill rubolino and i am the mother of a ten year
old son who is recovered from autism. i am here today to speak to you as a
parent, a health care professional, and a patient advocate.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">while i am fully aware of the time constraints regarding
public comments, i ask you for some leeway. last meeting we tolerated upwards
of 45 minutes listening to the most painfully inappropriate and inaccurate
description of “catatonia” i care to ever witness. i had to endure a
description of children who clearly suffered in some way and who were obviously
demonstrating the need for medical intervention, but would receive none.
instead, they would receive a label of “catatonia”.<span style="mso-spacerun: yes;"> </span>the fact that committee members thought that
presentation was a valuable addition and appropriate use of time and resource
is overshadowed only by the painful realization that autistic children were
being medically neglected under the guise of research. i could have thought of
a hundred better uses of that time, and this audience. in addition, i cannot go
forward without mentioning the outrageous suggestion that autistic children
wear a flotation device around their necks, and subsequently their airway, on a
continual basis so their lives would be spared from the drowning that may occur
if they should elope from their home and enter a body of water. i don’t mean
this comment to be facetious as drowning deaths are tragically the number one
cause of death for autistic children that wander. i say this to demonstrate the
absurdity that this committee, a federally funded committee, charged with
making recommendations about important issues affecting the autism community,
would not look at that suggestion and take pause.<span style="mso-spacerun: yes;"> </span>thousands of parents are out there, struggling
every single day to keep their children safe.<span style="mso-spacerun: yes;">
</span>i’m sure they were all appalled, as was i, by the ridiculous and
repeated suggestion of something so absurd. it begs to question the validity of
the participant’s qualifications and undermines the entire format which should
focus on real world, real time issues and needs with appropriate, well thought
out, mature suggestions. i do not need an interagency committee for a
suggestion of this caliber. that comment was an insult, and a mockery of the
seriousness with which the death of an autistic child should be discussed.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">autism statistically outnumbers all other pediatric illnesses
and continues to do so. this problem is of a magnitude that is almost
unbelievable. where do we go for help? this committee makes recommendations and
determines what issues get attention and funding in the coming years. while
there are huge medical associations, organizations and entire hospitals devoted
to other pediatric populations,<span style="mso-spacerun: yes;"> </span>autism
has a committee with no oversight and no accountability, that meets four times
a year to address the needs of over<span style="mso-spacerun: yes;"> </span>1.5
million children and adults. the response certainly doesn’t match the need.
there should be and entire staff devoted solely to autism and huge medical
centers across this country with multispecialty clinics that are treating
patients and doing constant research, but there isn’t. <o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">certainly, we are not the first set of parents to endure this
neglect. while you expect us to accept this as an appropriate response, these
former parents, called “refrigerator mothers”, had to endure far worse. not
only exclusion, and discrimination, but oppression by a medical community
that’s very existence is meant to serve the patient and family. a disgraceful,
epic failure of humanity and abuse of power, influence and discrimination by physicians.<span style="mso-spacerun: yes;"> </span>in the extraordinary film “refrigerator
mothers”, dorothy groomer, an african american mother of an adult son with
severe autism talks about her experience with physicians diagnosing her son as
“emotionally disturbed”.<span style="mso-spacerun: yes;"> </span>he was excluded
from the diagnosis of autism because, as she stated, “we did not fit the
classic mold for autism”, which at the time, was children of white, upper
middle class, educated parents. her doctors told her that her son, stephen,
could not be autistic because he was not white, and they assumed she was not
educated, and therefore he was diagnosed as “emotionally disturbed” instead.
unfortunately, we haven’t come very far. while parents continue to ask their
doctors to investigate their child’s physical symptoms, they are repeatedly
told those can only be attributed to their child’s autism and medical
diagnostic testing and treatment are withheld. just as we look back at that
time and see the response as barbaric, we will look back on this time in the
same light. <o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">while other parents of chronically ill children are able to
access health care, comprehensive teams and assistance, our parents have to go
it alone. policies to discriminate against our children are in place. while
many parents, like me, know that their children have adverse reactions to
vaccinations, pediatrician practices across our nation have created policies to
discriminate against parents who choose to not vaccinate or not vaccinate
according the recommended schedule. texas children’s pediatrics association has
48 locations in the houston area and is one of the largest pediatric practices
in the nation. several of their office locations have “office policies” that
state they will not take any patients whose parents choose not to vaccinate or
not to vaccinate according to the recommended schedule regardless of the reason
including both religious exemption and medical contraindication. they refused
to accept my child as a patient and in calling multiple locations as well as
texas children’s hospital both patient relations and their legal department, i
could not be provided with a written policy, an explanation, or any legal
framework to support this discriminatory policy, and yet it continues. in
almost twenty years of bedside nursing i have never witnessed another patient
population being denied healthcare based on their vaccination status. in fact,
a large majority of patients are noncompliant with their plan of care and yet
still receive immediate, comprehensive care. denying children access to health
care based on vaccination status is akin to not seeing a diabetic patient
because they don’t follow their diet or a renal patient who misses dialysis.
furthermore, denying any child access to a medical home pediatrician based on
vaccination status related to religious exemption is, in fact, religious
discrimination. <o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">the discrimination against this patient population by
pediatricians at the local level, physician organizations at the national
level, and agencies responsible for determining the response at the federal
level will have the same legal accountability as other health care
discrimination. for these reasons, we request a recommendation for a fully
funded legal assistance network to ensure these children receive appropriate
care, recommendations for mandatory investigation of discriminatory practices
of any health care organizations receiving federal funds through medicaid
programs, and an immediate intervention by this committee to formulate a plan
to evaluate your own lack of response to this very serious medical neglect of
an entire pediatric patient population.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">from a clinical perspective this leaves a large group of
medically complex children without basic medical care, without referrals to
specialists, and the task of coordination of care resting solely on the parents.
in addition to lack of access, those children that do enter into the healthcare
system, rarely get diagnostic testing and certainly are not offered the same
services as other pediatric patients with chronic illness including but not
limited to autism specialists, child life services, pediatric<span style="mso-spacerun: yes;"> </span>subspecialties, therapy services, social
work, case management, nutrition and parent support groups. here is a list of
just a few of the things autism parents are faced with instead:<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">lack of informed consent<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">violation of patient rights<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">unlawful notification of child protective services<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">failure to treat<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">failure to diagnose<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">unlawful seclusion, restraint and sedation<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">failure to meet federal mandates in regards to disability and
communication accommodation<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">discrimination against a disabled population<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">failure to keep the patient safe from harm<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">failure to assess and treat pain<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">not investigating physical symptoms that occur in any patient,
regardless of their autism diagnosis, is always medical neglect. whether the
practitioner regards autism as a psychiatric diagnosis, a medical diagnosis or
holds the opinion that autism is psychological with medical comorbidities does
nothing to change that. if a patient presents to the emergency room with
abdominal pain, diarrhea and vomiting, the process of diagnostic investigation
begins the same way whether that patient is neurotypical, autistic,
schizophrenic, alcoholic, an iv drug user, morbidly obese, diabetic, hiv, renal
failure, man, woman, child, even a federal agency employee…….it all begins with
the first step….perform a physical assessment and diagnostic work up. when a
practitioner fails to address the patient’s symptoms based on their disability,
it’s called discrimination.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;"><span style="mso-spacerun: yes;"> </span>no other case of
medical neglect, malpractice and discrimination illuminates my point better
than the case of alex spourdalakis. alex was a 14 year old boy who suffered
from severe autism and was hospitalized several times for an acute change in
status related to aggression and gastrointestinal symptoms. he was kept in four
point restraints for 22 consecutive days without an appropriate doctor’s order.
he was given a cocktail of psychotropic drugs that was ever changing and
ineffective. he had gastrointestinal disease that was never investigated. he
was discharged home from advocate lutheran general hospital, in park ridge,
illinois and nine days later was found dead after an apparent murder-suicide
attempt. his mother, dorothy, and godmother found unconscious at the scene are
currently incarcerated in illinois. i caution you to make a rebuttal comment
about the impression that anyone in our community perpetuates the idea that
taking your child’s life is ever acceptable no matter how difficult your road.
a pristine example of everlasting devotion, dedication and meticulous care
given to her child is michelle guppy and her son brandon, now 19, who at age 18
months experienced a vaccine injury and now suffers from relentless seizures
and severe autism.<span style="mso-spacerun: yes;"> </span>although she and i
live in houston, the location of the largest medical center in the world, she
cannot get adequate health care for her child. it is only because of her
devotion to him, her faith in God and his warrior spirit, that he is alive
today. this is the path we endorse, as difficult as it is.<span style="mso-spacerun: yes;"> </span>dorothy did not follow the same path.<span style="mso-spacerun: yes;"> </span>and before you speak out about calling for a
hate crime, i suggest you check your email inbox. were you contacted to help
this child, and didn’t? you see, this child was not hidden away from everyone;
he was right up in our faces. he had been in and out of the hospital for months
with countless requests by his mother for investigation of his medical problems
and repeated reference to his gastrointestinal symptoms in his medical record,
all going un-investigated. his patient rights were violated, his civil rights
were violated, his disability rights were violated and he was a victim of
medical neglect and malpractice. every local, state and federal agency was
notified. every resource was contacted. every single agency available knew
about this child, and yet, he was sent out into the world with no support and
discharged to home with his mother to care for him on her own. without ever
receiving medical treatment. why aren’t any of the same organizations calling
for a hate crime, asking the hospital how they could safely discharge that
patient?<span style="mso-spacerun: yes;"> </span>why isn’t the state agency that
was supposed to be monitoring this child being investigated? because this mom
is in jail for killing her child. that doesn’t change those facts. we know
those facts, we have those facts, and i am here to tell you, we will never go
away. you can’t change the truth, no matter how hard you try. alex suffered the
same medical neglect that all of our kids do. his mother suffered the same
fate, when trying to advocate for her child’s health, doctors called child
protective services. and this is the fate of so many parents. no support, no
real help, and everyone covering up their part in it; their part in
contributing to thousands of children being sent out into the world with parents
who cannot keep them safe, or healthy because there is absolutely no
appropriate healthcare.<span style="mso-spacerun: yes;"> </span>alex was
hospitalized multiple times over a period of seven months and yet not once, did
he receive a comprehensive diagnostic work up. he received copious amount of
psychotropic drugs and unlawful restraint. and may i remind you that
restraining a patient without a physician order, and continuing a restraint
that is already in place without a doctors order is considered assault and
battery, every instance,<span style="mso-spacerun: yes;"> </span>every time. but
those healthcare providers won’t be prosecuted, because alex’s mom is in jail.
but we won’t forget. this was a polarizing event for our community. since
alex’s death, there have been more children killed by their parents.<span style="mso-spacerun: yes;"> </span>when will it be enough? when will it be
enough devastation for this committee to stand up and make some real world
recommendations that address our needs?<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">the last iacc meeting i attended was july 9<sup>th</sup>.<span style="mso-spacerun: yes;"> </span>dr. frye and dr. buie gave wonderful
presentations covering the need for medical investigation and treatment for our
children’s medical issues. both physicians stated in their presentations that
some children show tremendous improvement and even completely recover with
treatment. my child is one of those. what i can’t figure out is why wouldn’t
you want that? why would you not want to institute a comprehensive plan to
medically treat these children to improve their outcomes?<span style="mso-spacerun: yes;"> </span>dr. perrin from the atn and president-elect
of the american academy of pediatrics was also in attendance. he stated that
within the aap there was a task force already in existence working on all
things related to autism. he expressed interest in working with both doctors,
yet still no work has been done. since that meeting, neither physician has been
contacted by anyone from this committee, the aap or the task force.<span style="mso-spacerun: yes;"> </span>lyn redwood stressed the importance of
addressing our kids’ medical issues and suggested a working group; still no
work has been done. parents have come here time and time again requesting the need
for addressing medical issues; still no work has been done.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i bring to you today the stories of many children, who like
thousands out there, have parents who brought them to the doctor and to the
hospital looking for help, but received none.<span style="mso-spacerun: yes;">
</span>you see their pictures up on the screen and their stories are in my
comments.<span style="mso-spacerun: yes;"> </span>i encourage you to read them.
their children suffer from seizures, abdominal pain, diarrhea and constipation,
self- injurious behavior, relentless fevers, metabolic and mitochondrial disorders,
immunological disorders, ataxia, unidentified rashes and a whole host of other
symptoms. they are suffering, and yet they receive no medical care. they are
being discriminated against because of their disability. this will stop. we
will make it stop.<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-size: 10pt; line-height: 115%; mso-bidi-font-size: 11.0pt;"><span style="font-family: "Courier New", Courier, monospace;">i publicly request you make a recommendation to formulate a
comprehensive plan, including a working group, to address the medical needs and
medical neglect of all autistic patients, children and adults. i remind you
that as members of this committee you have a moral, ethical, and legal
obligation to utilize the resources available to you, including federal
funding, to address this need on an emergent basis.<span style="mso-spacerun: yes;"> </span>we will continue to advocate for this patient
population and will seek assistance for funding and legal representation to
ensure our children and adults with autism receive the same access to medical
care as all other patient populations. failure to make this a priority for this
committee is unacceptable.<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com2tag:blogger.com,1999:blog-4515966091782435722.post-63582428505835238742013-08-07T12:19:00.000-07:002013-08-07T17:47:34.361-07:00iacc and medical discrimination<br />
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span></u></b> </div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">our kids’ count.i know i lack basic writing skills so
you probably overlooked that meaning. i really wanted our kids’ count. how many
are we? well, let me look, 1 in 50. so how many is that? it says 1 in 50
“school kids” so i’m assuming that means school age children between the ages
of 5 and 18? whatev, that’s a lot of kiddos. it’s two percent.<span style="mso-spacerun: yes;"> </span>i looked up the latest population stats and
two percent is really about 1.3 million kids. okay. hang tight. then i saw
these reports…<o:p></o:p></span></span></div>
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">“one in fifty kids is diagnosed with cancer”<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">“one in fifty kids has diabetes”<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">“one in fifty kids is diagnosed with hiv.”<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">oh wait, no i didn’t. because it’s not happening. it’s just our
kids with autism. omg!!! did she just compare autism to hiv?!?! damn straight i
did. if your kid has hiv, they actually know what’s going on. if your kid has
autism, ninety-nine percent of mainstream medicine has no idea what’s going on
with your kid.<span style="mso-spacerun: yes;"> </span>but that’s not why i
bring it up….totally. what if your kid has autism and hiv? you’d never know it
because your kid, by design, does not get any medical diagnostic testing, how
about autism and a brain tumor? nope. i mean they both have a neurologic
symptom but autism doesn’t get checked out so if your kid has the world’s worst
evil luck and they have both, that brain tumor is gonna go undetected.
(actually happened, true story)<span style="mso-spacerun: yes;"> </span>why do
they do that, you say? because they can. who’s stopping them?<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">is it negligence that over one million children have autism and
somehow nobody knows what causes it? really? how much common sense does that
make? if you work in medicine, you know what i’m talking about. if you can
breathe, you know what i’m talking about. let’s think of all the medical
advances we have. nanotechnology, minimally invasive surgery, robotics,
vaccines in a chip, but autism, frickin mystery. can you name one other
disease, syndrome, whatever you like to call it, lump them all together, can
you name one other “thing” that has a ratio of 5:1 gender bias that scientists
cannot figure out? not me. okay, let’s go here…..there’s no biomarker. right.
well let’s just close down the factory because lord knows there’s not a whole
bunch of other shit that is diagnosed by exclusionary criteria. and truth be
told, most of us didn’t even get a simple frickin blood test. wtf?<span style="mso-spacerun: yes;"> </span>ok, enough about that. get to the point.<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">dear medical complex<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">it’s over<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">your long run of “we will ignore the medical side so that we
won’t do any simple basic medical testing so that we won’t find the basic
answer which we already know has to do with vaccines and immunological
dysfunction and toxic load and all that other shit and we’ll lock them out of
the system altogether”…..days are over. over!!!!!!!!!!!!!!<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">here’s why. you are so stupid that you let our numbers get so
big that now we are actually a large separate population. and one that has a
child with a disability…..and rights, disability rights….and votes…..and
lawyers. you’ve made it so difficult for us to access healthcare for our kids
that we have gone to great lengths outside of your system, to try to get them
well. and that has cost us money, jobs, homes, marriages, family, friends, our
own health. it has devastated us as a community. what happened, simple
sociology here, simple math. we hooked up. yep. somehow in this fucked up mess
baby jesus put people together like me and kelly peters…..can you say swear
off? how about jeanna reed and amanda lochbaum? better get your game face on
that mandee looks all sweet but she will cut you and jeanna will record that
shit for later. lj goes and dawn loughborough…….umm…..they come with a
complimentary small pack of tissue so you can clean yourself up off the floor.
and thousands of other “autism hook ups” that really make us all just one big
population of fearless people who would die for their kid, have nothing to
lose, and are as angry as hell. good job einsteins.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">so why do other parents with sick kids get to take their kids to
a doctor that’s covered by insurance? when they go to the hospital, they get
tests. and if their child is chronically ill, they get a social worker, and a
case manager, and a child life specialist, countless specialty physicians, all
the nurses are thoughtful and caring and supportive. why not us?<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">because we have not yet flexed our ‘patient rights’ muscle. if
you’re not sure if you have one, scrape the crusted almond flour off your
sleeve, we know you haven’t showered today, and check it………it’s there. probably
extremely underdeveloped, it may be covered by your large poopisode muscle.
well, i am here today to tell you, we are one. one big patient rights
organization. we are patients…….we have rights…….and we are fairly organized.
we are already there people.<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">let’s get down to business. do you know your patient rights? if
not….check them out here<o:p></o:p></span></span></div>
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</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://www.jointcommission.org/Speak_Up__Know_Your_Rights/"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.jointcommission.org/speak_up__know_your_rights/</span></a><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">do you know your disability rights related to health care? if
not check them out here<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://www.hhs.gov/ocr/office/index.html"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.hhs.gov/ocr/office/index.html</span></a><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://www.cdc.gov/ncbddd/aboutus/healthcare-disability.html"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.cdc.gov/ncbddd/aboutus/healthcare-disability.html</span></a><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://www.ada.gov/pcatoolkit/chap3toolkit.htm"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.ada.gov/pcatoolkit/chap3toolkit.htm</span></a><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">and when was
the last time you took your disabled child to a health care provider who
attempted to communicate with him/her in the manner they are accustomed to?
no?! did you know that was a violation of their civil rights? well it is. this
is from the national association of the deaf. but our kids aren’t deaf!!<span style="mso-spacerun: yes;"> </span>i know, i know. check out title ii and iii
below it.<o:p></o:p></span></span></div>
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</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Courier New"; font-size: 12pt;"><a href="http://www.nad.org/issues/health-care/providers/questions-and-answers"><span lang="EN" style="mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.nad.org/issues/health-care/providers/questions-and-answers</span></span></a></span><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">doctors,
nurses, dentists, specialists, therapists, and other health care providers must
communicate effectively to provide appropriate, effective, quality health care
services.<o:p></o:p></span></span></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">federal disability discrimination laws mandate equal
access to and an equal opportunity to participate in and benefit from health
care services, and effective communication with individuals who are deaf or
hard of hearing. these laws include:<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt 30pt; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -0.25in;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="font-family: "Courier New"; font-size: 10pt; mso-ansi-language: EN; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";">section 504 of the rehabilitation act of 1973 – applies to federal health
care services and facilities; and health care providers who are also recipients
of federal financial assistance, usually provided by direct funding (<b style="mso-bidi-font-weight: normal;">such as federal medicaid funds</b>) or by
grants (such as a federal research grant). <o:p></o:p></span></i></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt 30pt; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -0.25in;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="font-family: "Courier New"; font-size: 10pt; mso-ansi-language: EN; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";">title ii of the americans with
disabilities act – applies to all public (state and local) health care
providers.<o:p></o:p></span></i></b></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt 30pt; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -0.25in;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="font-family: "Courier New"; font-size: 10pt; mso-ansi-language: EN; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";">title iii of the americans with
disabilities act – applies to all private health care providers.<o:p></o:p></span></i></b></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="font-family: "Courier New"; font-size: 12pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">title iii of the americans with disabilities act (ada)
prohibits discrimination against individuals with disabilities by places of
public accommodation. 42 u.s.c. §§ 12181 - 12189.<b style="mso-bidi-font-weight: normal;"> private health care providers are considered places of public
accommodation. </b>the u.s. department of justice issued regulations under
title iii of the ada at 28 c.f.r. part 36. the department’s analysis to this
regulation is at 56 fed. reg. 35544 (july 26, 1991).<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: "Courier New"; font-size: 12pt;"><span style="font-family: "Courier New", Courier, monospace;">title ii highlights<o:p></o:p></span></span></u></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://www.ada.gov/t2hlt95.htm"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://www.ada.gov/t2hlt95.htm</span></a><o:p></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Courier New", Courier, monospace;"><b><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">vi.
communications</span></i></b><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">
<o:p></o:p></span></i></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">state and
local governments must ensure effective communication with individuals with
disabilities.<br />
<br />
where necessary to ensure that communications with individuals with hearing,
vision, or<b style="mso-bidi-font-weight: normal;"><u> speech impairments </u></b>are
as effective as communications with others, the public entity must provide
appropriate auxiliary aids. <o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">"auxiliary
aids" include such services or devices as qualified interpreters,
assistive listening headsets, television captioning and decoders,
telecommunications devices for deaf persons (tdd's), videotext displays,
readers, taped texts, brailled materials, and large print materials.<br />
<br />
a public entity may not charge an individual with a disability for the use of
an auxiliary aid.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">telephone
emergency services, including 911 services, must provide direct access to
individuals with speech or hearing impairments.<br />
<br />
public entities are not required to provide auxiliary aids that would result in
a fundamental alteration in the nature of a service, program, or activity or in
undue financial and administrative burdens. however, public entities must still
furnish another auxiliary aid, if available, that does not result in a
fundamental alteration or undue burdens.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">title
iii highlights<o:p></o:p></span></span></u></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 3;">
<b><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">vi.
auxiliary aids<o:p></o:p></span></span></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 5pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">a public accommodation
must provide auxiliary aids and services when they are necessary to ensure
effective communication with individuals with hearing, vision, or <b style="mso-bidi-font-weight: normal;"><u>speech impairments</u>.</b><br />
<br />
"auxiliary aids" include such services or devices as qualified
interpreters, assistive listening headsets, television captioning and decoders,
telecommunications devices for deaf persons (tdd's), videotext displays,
readers, taped texts, brailled materials, and large print materials. <br />
<br />
the auxiliary aid requirement is flexible. for example, a brailled menu is not
required, if waiters are instructed to read the menu to blind customers.<br />
<br />
auxiliary aids that would result in an undue burden, (i.e., "significant
difficulty or expense") or in a fundamental alteration in the nature of
the goods or services are not required by the regulation. however, a public
accommodation must still furnish another auxiliary aid, if available, that does
not result in a fundamental alteration or an undue burden.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">how many places
have you taken your child where you arrived and they had a whole policy in
place, or protocol to follow so your child’s disability is accommodated? none?
remember alex spourdalakis. i asked loyola several times what their policies
and protocols were regarding caring for autistic patients. so did fox news
chicago. here’s what i got. love the “re: your other question”. after speaking
with me on the phone i think she felt that when dealing with me, the less
words, the better. i’m not sure though. you could always call and ask her.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">jill, <o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">here
(attached below) is the statement we provided to the media.<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">re: your
other question:<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">our
approach to patient care is based on the needs of the patient.<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><br /><span style="font-family: "Courier New", Courier, monospace;">
anne<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">anne
dillon<br />
director of pr/media relations loyola university health system<br />
708-216-8232 desk<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Courier New", Courier, monospace;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">708-441-7651
mobile<br />
708-216-7981 fax<br />
</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt;"><a href="mailto:adillon@lumc.edu" target="_blank"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">adillon@lumc.edu</span></a></span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;"><span style="mso-spacerun: yes;"> </span><span lang="EN"><o:p></o:p></span></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">and in regards to
his treatment at their facility ……..according to them, this explains
everything:<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">loyola
university health system statement<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">june
10, 2013<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">patient
safety and privacy in police investigations<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">one of our
highest priorities as a health system is to ensure that our patients are safe
and that their privacy is protected in accordance with federal hipaa laws and
the wishes of the patient.<span style="mso-spacerun: yes;"> </span>we cannot
speak to a specific patient situation without the patient’s permission. in
circumstances that involve police investigations, we work collaboratively with
law enforcement and other state and federal agencies to help support these
inquiries. <o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">really? because i
was doing some reading and i found this under title iii<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 3;">
<b><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">ii.
overview of requirements <o:p></o:p></span></span></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Courier New", Courier, monospace;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">public accommodations must</span></i></b><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"> -- <o:p></o:p></span></i></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 5pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">provide goods and
services in an integrated setting, unless separate or different measures are
necessary to ensure equal opportunity. <br />
<br />
eliminate unnecessary eligibility standards or rules that deny individuals with
disabilities an equal opportunity to enjoy the goods and services of a place of
public accommodation. <br />
</span><b style="mso-bidi-font-weight: normal;"><br /><span style="font-family: "Courier New", Courier, monospace;">
make reasonable modifications in policies, practices, and procedures that deny
equal access to individuals with disabilities, unless a fundamental alteration
would result in the nature of the goods and services provided.</span></b><span style="font-family: "Courier New", Courier, monospace;"> <br />
<br />
furnish auxiliary aids when necessary to ensure effective communication, unless
an undue burden or fundamental alteration would result.<br />
<br />
remove architectural and structural communication barriers in existing
facilities where readily achievable. <br />
<br />
provide readily achievable alternative measures when removal of barriers is not
readily achievable.<br />
<br />
provide equivalent transportation services and purchase accessible vehicles in
certain circumstances. <br />
<br />
maintain accessible features of facilities and equipment.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">so. what does all
this mean for us? well, it means that everything to provide our children with
comprehensive medical care covered by insurance is already in place. it means
that our kids deserve the same treatment as all other patient populations. we
deserve the same accommodations, multidisciplinary teams, support services, and
treatment with respect. it means that a committee like the iacc, who uses
funding to meet for one day four times a year cannot do anything productive for
a patient population of 1.3 million children. especially since they only
decided just this year to ask a few doctors to attend. their responsibility is
to make recommendations. why don’t they recommend we stop being discriminated
against? why don’t they recommend that a medical standard of care be
developed?<span style="mso-spacerun: yes;"> </span>it really means it’s up to
us. yes. yet another frickin thing on our long list of shit we have to take
care of. but the great thing is now we have our “hook up”. and here’s how we
are gonna roll.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><u><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">step one<o:p></o:p></span></span></u></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">realize we are not
gonna change the painfully obvious avoidance of the real issues our kids face
without making our presence known. every fucking time. i’ll use the same theory
i use with my husband. i’m in it for distance and irritation. go to the iacc
meeting if you can. once you’re there, you realize you really need to be there.
these are our kids they’re talking about. if not…..send your child. that’s
right. send your kid to iacc. to see how….go to step two.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><u><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">step two<o:p></o:p></span></span></u></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">send me a two page
letter explaining how your child is sick, and they didn’t get the medical care
that they needed. please don’t send more than two pages or i won’t be able to
include it. realize, i will be using this information for more than just the
iacc meeting so do not include any personal information that you are not
comfortable with sharing. that doesn’t mean i’ll post it on facebook, it just
means if i get an elevator ride with an attorney, you better damn bet i’m
pressing that emergency stop button and whipping those bad boys out to show
him. and if i should happen to be speaking with one of the student
organizations at south texas law school, i will want to use your stories to
make my point. and if i just happen to be in dc for a congressional hearing and
someone in congress is within my perimeter……you guessed it….distance and
irritation. so if you’re reading this blog, this will serve as my disclaimer.
on the flipside, your kid’s story will go to iacc. because all of our kids
count. every last one.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">please send your
two page story with picture, if you like, to </span><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="mailto:bringourkidstoiacc@gmail.com"><span lang="EN" style="mso-ansi-language: EN;"><span style="color: blue;">bringourkidstoiacc@gmail.com</span></span></a></span><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">i will not be able
to return them. but i promise i will make them count. promise.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">now……you should
also submit them to written public comment to get them into the public record.
it’s very very very very very easy. all you need to do is send it in an email
to </span><span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="mailto:IACCPublicInquiries@mail.nih.gov?subject=Requests%20for%20Public%20Comment"><span style="color: blue;">iaccpublicinquiries@mail.nih.gov</span></a><span style="color: black;">.<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="http://iacc.hhs.gov/public-comment/index.shtml"><span lang="EN" style="mso-ansi-language: EN;"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://iacc.hhs.gov/public-comment/index.shtml</span></span></a></span><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><u><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">step three<o:p></o:p></span></span></u></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">take my survey.
please. do it. the results will accompany our information and help demonstrate
our need for appropriate access to healthcare. it's 23 yes or no questions.<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New"; font-size: 12pt; line-height: 115%;"><a href="https://www.surveymonkey.com/s/autismhealthcarediscrimination"><span lang="EN" style="mso-ansi-language: EN;"><span style="color: blue; font-family: "Courier New", Courier, monospace;">https://www.surveymonkey.com/s/autismhealthcarediscrimination</span></span></a></span><span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">that’s it.
now……bitches<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">let’s ride<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">peace out<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: black; font-family: "Courier New"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">jill<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com3tag:blogger.com,1999:blog-4515966091782435722.post-71256193733740407962013-07-17T22:06:00.000-07:002013-07-17T22:11:24.913-07:00alex and patient rights<span style="font-family: "Courier New", Courier, monospace;"></span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">in healthcare, pain is subjective. even if you don’t think
the patient is in pain, it’s not up to you. that’s the meaning of subjective
and all ethical treatment of patients includes assessment and treatment of
pain...period. unless you are autistic and nonverbal. then, by all means your
pain is impossible to assess and doesn’t need to be treated. that’s just what
happened to alex spourdalakis for 22 consecutive days as he lay on an er cart
or in a bed in four point locked restraints (a whole notha story). so how does
this happen? if you are what is better known in the medical community as a
“frequent flyer” and you come into the hospital and demand that your pain is
medicated, you get it. if your pain is assessed and you report it as 10 out of
10 while you talk on the phone, paint your nails and watch tv from your
hospital bed...guess what...you get medicated. if that medication allows you
enough pain relief to leave your hospital room, walk down to the lobby and
outside to smoke a cigarette...or whatever...guess what? ethically,
realistically, legally, and as a matter of protocol...your pain is assessed and
medicated. now...if you’re a sick, nonverbal, autistic child covered in a rash,
with abdominal distension, vomiting, and you are banging your head and ripping
at your clothes...by all means there is no way those same healthcare providers
can be expected to assess your pain. <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">here are some of the patients whose pain can be assessed
with standardized pain assessment tools specially designed just for them:<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">newborn infants (they can’t talk either, sometimes they are
on ventilators)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patients in a coma (can’t talk, most have a breathing tube
down their trachea)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patients on hospice and so close to death that they are
unresponsive (we can still assess their pain but no, generally, they can’t
talk)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patients who suffer from burns (we can just go ahead and
assume they are in pain)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patients with brain injuries (sometimes can talk, lots of
times are confused)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patients that had some oral maxillofacial surgery (mostly,
can’t talk, especially if their jaw is wired shut)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">i mean, i can go on for days. there is an endless amount of
examples of patients who have limited or altered cognitive, communicative and
physical ability to express their pain and yet we, as healthcare providers, are
not exempt from assessing their pain and treating it. this is why pain is the
fifth vital sign. this is why there are all different assessment tools to
utilize based on the patient population and their ability or inability to express
pain.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">why then, would this child, clearly having some type of
issue, be denied the same basic right as all other patients based solely on his
ability or inability to verbally express his pain?<span style="background-color: #cccccc;"> that inability to verbally
express his pain directly related to his disability of autism makes this lack
of assessment and treatment a discrimination against a disabled individual. and
furthermore, the widespread practice across this nation in all healthcare
settings, including the pediatricians’ offices, to not assess these
individuals’ pain utilizing one of the many standardized assessment tools
available to them and recommended for use, is nothing more than discrimination
and a violation of the patient rights and civil rights of each and every single
individual, each and every occurrence.</span><span style="mso-spacerun: yes;">
</span>in addition to being unethical and guilty of malpractice, each
healthcare provider that does not utilize an appropriate pain assessment tool
to determine these kids’ level of pain, negates the need to utilize this
symptom...pain...to determine the next diagnostic step. avoiding the subsequent
investigation of that pain, findings, and treatment plan based on that symptom
kind of eliminates the need for... ya know...the basic practice of medicine.<span style="mso-spacerun: yes;"> </span>deviation from this method used to determine
a patient’s treatment—--patient presents with symptom, physical assessment
performed, diagnostic tests performed as indicated, diagnosis is made,
treatment is determined, follow up to see if problem is resolved or
resolving—--is called malpractice. because anyone can just guess. so if these
doctors and other practitioners want us not to think they are just idiots then
they must display some type of behavior that indicates that they did attend
medical school and a residency program and they do have some form of
specialized training. because we can guess all by ourselves.<span style="mso-spacerun: yes;"> </span>this may sound like a lot of jibber jabber to
a<span style="mso-spacerun: yes;"> HCPBBP</span> (health care provider blinded
by pharma) so here are<span style="mso-spacerun: yes;"> </span>two scenarios
that illuminate my point for those that may or may not have lingered around
after reading the last post.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">hypothetical patient one<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patient enters the hospital through the emergency room with
a diagnosis of abdominal pain. he was found down in an alley, obviously
homeless, covered in bloody stool. incoherent, he is unable to communicate his
needs including his pain. not sure how his diagnosis for pain was determined
but thinking it was the most appropriate coding arrived at by the er
physician?<span style="mso-spacerun: yes;"> </span>i mean, the guy had bloody stool
we can assume he was having some abdominal pain, right? so he is cleaned up,
medicated, and scoped by gi (after their consult of course) and social work is
gonna see him for help with a shelter and what not. he’s got a million other
health problems that are addressed while he’s hospitalized, because he’s probably not
gonna be following up with his primary physician, seeing how he’s homeless and
all. easy peasy lemon squeezy.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">hypothetical patient two<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">fourteen year old severely autistic, nonverbal child is
brought in to the emergency room by his parent specifically for help with his
gastrointestinal symptoms of abdominal distension, vomiting, decreased food
intake, and increased aggression and agitation secondary to pain. these
behaviors are new onset and he has not had any investigation of his gi system
as of yet. diagnosis is made of aggression, not abdominal pain, because i’m
sure that’s the most appropriate coding arrived at by the er physician? the
child is kept in locked restraints for days on end without appropriate
assessment or any assessment of or medication for pain at all. that’s
okay..right? <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New", Courier, monospace;">even though all
research says this……<o:p></o:p></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>“if the gastrointestinal
disorder is recognized and<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>medical treatment is
effective, the problem<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>behaviours may diminish.
when abdominal pain or<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>discomfort is a setting
event, psychotropic<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>medications are likely to
be ineffective and may<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>even aggravate the
problem if they have adverse<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;"><em>
</em></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><span style="font-family: "Courier New", Courier, monospace;"><em>gastrointestinal
effects.”<o:p></o:p></em></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<b><i><span style="mso-bidi-font-family: HelveticaNeueLTStd-MdIt;"><span style="font-family: "Courier New", Courier, monospace;">consensus
report, american association of pediatrics -<o:p></o:p></span></span></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;"><b><i><span style="line-height: 115%; mso-bidi-font-family: HelveticaNeueLTStd-MdIt;">buie et al., 2010</span></i></b><span style="line-height: 115%; mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%; mso-bidi-font-family: HelveticaNeueLTStd-Roman;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New", Courier, monospace;"><span style="mso-spacerun: yes;"> </span>and the aap says this…..<o:p></o:p></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode";"><span style="font-family: "Courier New", Courier, monospace;">the most common gi diagnoses identified in
children with asds include constipation, diarrhea, and gastroesophageal reflux,
and these are usually treated in a standard manner.</span></span></i><a href="http://pediatrics.aappublications.org/content/130/Supplement_2/S160.full#ref-9"><i style="mso-bidi-font-style: normal;"><sup><span lang="EN" style="color: blue; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; text-decoration: none; text-underline: none;"><span style="font-family: "Courier New", Courier, monospace; font-size: small;">9</span></span></sup></i></a><span style="font-family: "Courier New", Courier, monospace;"><span style="font-size: small;"><i style="mso-bidi-font-style: normal;"><sup><span lang="EN" style="color: #403838; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode";">,</span></sup></i><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode";"><a href="http://pediatrics.aappublications.org/content/130/Supplement_2/S160.full#ref-10"><sup><span style="color: blue; line-height: 115%; text-decoration: none; text-underline: none;">10</span></sup></a> <span style="background: lightgrey; mso-highlight: lightgrey;">children with asds may not present with the typical
symptoms of a gi disorder, however, and an alteration of their baseline
behavior may be the only indicator of its existence.</span> there is a serious
dearth of adequately designed studies on treatments for documented gi disorders
and their outcomes, including behavioral changes, in children with asds</span></i><span lang="EN" style="color: #403838; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode";">.<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<a href="http://pediatrics.aappublications.org/content/130/Supplement_2/S160.full"><i style="mso-bidi-font-style: normal;"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://pediatrics.aappublications.org/content/130/supplement_2/s160.full</span></i></a><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New", Courier, monospace;">and this…..<o:p></o:p></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in; text-align: justify;">
<span style="font-family: "Courier New", Courier, monospace;"><i><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";">individuals with asds who present with gastrointestinal symptoms warrant a
thorough evaluation, as would be undertaken for individuals without asds who
have the same symptoms or signs. evidence-based algorithms <span style="background: lightgrey; mso-highlight: lightgrey;">for the assessment of
abdominal pain</span>, constipation, chronic diarrhea, and gastroesophageal
reflux disease (gerd) should be developed.</span></i><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></i></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in; text-align: justify;">
<span style="font-family: "Courier New", Courier, monospace;"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="background: lightgrey; color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman"; mso-highlight: lightgrey;">individuals with asds deserve the same thorough diagnostic workup for
gastrointestinal symptoms as should occur for other patients.</span></i><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"> there is no evidence for pathogenic
mechanisms specific to asds that warrant a distinct diagnostic approach.
guidelines for the evaluation of common gastrointestinal symptoms have been
developed by medical societies, medical centers, and managed care practices.</span></i></span><a href="http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full#ref-9"><i style="mso-bidi-font-style: normal;"><sup><span lang="EN" style="color: blue; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman"; text-decoration: none; text-underline: none;"><span style="font-family: "Courier New", Courier, monospace; font-size: small;">9</span></span></sup></i></a><i style="mso-bidi-font-style: normal;"><sup><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace; font-size: small;">–</span></span></sup></i><a href="http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full#ref-12"><i style="mso-bidi-font-style: normal;"><sup><span lang="EN" style="color: blue; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman"; text-decoration: none; text-underline: none;"><span style="font-family: "Courier New", Courier, monospace; font-size: small;">12</span></span></sup></i></a><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"> few, if any, published documents have
addressed modifications in the diagnostic evaluation on the basis of the needs
of persons with disabilities such as impaired language. an evidence base is
needed to guide evaluation and therapy, but until appropriate studies are
conducted, guidelines must be based on expert opinion.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in; text-align: justify;">
<a href="http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="color: blue; font-family: "Courier New", Courier, monospace;">http://pediatrics.aappublications.org/content/125/supplement_1/s1.full</span></span></i></a><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in; text-align: justify;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in; text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">and this!!!!!<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: rgb(238, 238, 238); line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Courier New", Courier, monospace;"><b><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";">table 2</span></b><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: rgb(238, 238, 238); line-height: normal; margin: 11.25pt 0in;">
<span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">behaviors that may be markers of abdominal
pain or discomfort in individuals with asds<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; mso-yfti-tbllook: 1184;"><span style="font-family: "Courier New", Courier, monospace;">
</span><thead><span style="font-family: "Courier New", Courier, monospace;">
</span>
<tr style="height: 22.5pt; mso-yfti-firstrow: yes; mso-yfti-irow: 0;"><span style="font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); height: 22.5pt; padding: 0in; width: 148.5pt;" valign="bottom" width="198"><span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">vocal behaviors<o:p></o:p></span></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span></td><span style="font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); height: 22.5pt; padding: 0in; width: 3in;" valign="bottom" width="288"><span style="font-family: "Courier New", Courier, monospace;">
</span><b style="mso-bidi-font-weight: normal;"><span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">motor behaviors</span></span></b><span style="font-family: "Courier New", Courier, monospace;">
</span></td><span style="font-family: "Courier New", Courier, monospace;">
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<b style="mso-bidi-font-weight: normal;"><span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">changes in overall state<o:p></o:p></span></span></b></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">frequent clearing of throat, swallowing,
tics, etc<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">facial grimacing<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">sleep disturbances: difficulty getting to
sleep, difficulty staying asleep</span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">screaming<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">gritting teeth<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">increased irritability (exaggerated
responses to stimulation)</span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">sobbing “for no </span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">reason at all”<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">wincing<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">noncompliance with demands that typically
elicit an appropriate response (oppositional behavior)<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">sighing, whining<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">constant eating/drinking/swallowing <o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">(“grazing” behavior)<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">moaning, groaning<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">mouthing behaviors: chewing on clothes
(shirt sleeve cuff, neck of shirt, etc), pica </span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">delayed echolalia that <o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">includes reference to pain or stomach (eg,
child says, “does your tummy hurt?” echoing what mother may have said to
child in the past) </span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">application of pressure to abdomen:
leaning abdomen against or over furniture or kitchen sink, pressing hands
into abdomen, rubbing abdomen <o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">direct verbalizations (eg, child says
“tummy hurts” or says “ouch,” “ow,” “hurts,” or “bad” while pointing to
abdomen)<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">tapping behavior: finger tapping on throat<o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">any unusual posturing, which may appear as
individual postures or in various combinations: jaw thrust, neck torsion,
arching of back, odd arm positioning, rotational distortions of torso/trunk,
sensitivity to being touched in abdominal area/flinching <o:p></o:p></span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">agitation: pacing, jumping up and down</span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;">unexplained increase in repetitive
behaviors</span></span></div>
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<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
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</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><span style="background-color: #cccccc;">self-injurious behaviors: biting,
hits/slaps face, head-banging, unexplained increase in self-injury.</span></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;"><o:p></o:p></span></span> </div>
<span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span></td><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); padding: 0in; width: 103.5pt;" valign="top" width="138"></td><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span></tr>
<span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span>
<tr style="mso-yfti-irow: 13; mso-yfti-lastrow: yes;"><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); padding: 0in; width: 148.5pt;" valign="top" width="198"></td><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); padding: 0in; width: 3in;" valign="top" width="288"><span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><span style="background-color: #cccccc;">aggression: onset of, or increase in,<o:p></o:p></span></span></span></div>
<span style="background-color: #cccccc; font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Courier New", Courier, monospace;"><span style="background-color: #cccccc;">aggressive behavior<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span></td><span style="font-family: "Courier New", Courier, monospace;">
</span><td style="background-color: transparent; border: rgb(0, 0, 0); padding: 0in; width: 103.5pt;" valign="top" width="138"></td><span style="font-family: "Courier New", Courier, monospace;">
</span></tr>
<span style="font-family: "Courier New", Courier, monospace;">
</span></tbody></table>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin: 11.25pt 0in 11.25pt 30.6pt; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: -0.25in;">
<span style="font-family: "Courier New", Courier, monospace;"><span lang="EN" style="color: #403838; font-family: Symbol; mso-ansi-language: EN; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span lang="EN" style="color: #403838; mso-ansi-language: EN; mso-bidi-font-family: "Lucida Sans Unicode"; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Courier New", Courier, monospace;">and the joint
commission says this…..<o:p></o:p></span></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: ArialNarrow;"><span style="font-family: "Courier New", Courier, monospace;">you have a right to have your pain
addressed<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: ArialNarrow;"><span style="font-family: "Courier New", Courier, monospace;">you have the right to
care that is free from discrimination.<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: ArialNarrow;"><span style="font-family: "Courier New", Courier, monospace;">this means you should
not be treated differently<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: ArialNarrow;"><span style="font-family: "Courier New", Courier, monospace;">because of:<o:p></o:p></span></span></i></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">age<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">race<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">ethnicity<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">religion<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">culture<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">language<o:p></o:p></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;"><span style="background: lightgrey; mso-highlight: lightgrey;">physical or mental disability</span><o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">socioeconomic status<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">sex<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">sexual orientation<o:p></o:p></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">gender identity or expression<o:p></o:p></span></i><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;">http://www.jointcommission.org/assets/1/6/know_your_rights_brochure.pdf<o:p></o:p></span></i></b></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<o:p><span style="font-family: "Courier New", Courier, monospace;"> </span></o:p></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">but..<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">these kids are just psych. so we “snow him” with psych meds
and don’t investigate his pain or gi symptoms and lock him away as soon as we
possibly can. oh, wadda mean? no psych place will take him...well wtf? why not?
because he has too many medical problems? well i thought we cleared him
medically? let’s just let the kid sit there, locked down, in pain while we
argue about it for 25 or so days. in the end we’ll dump him out because
insurance isn’t gonna pay any more days and we can’t find anywhere to take him.
even though it’s our job to ensure a safe discharge, and we didn’t, and his mom
killed him nine days later, don’t worry because no press outlets will say our
name anyway and the mom is in jail so nobody will be coming after us, let alone
some other crazy ass autism mom who has over 700 emails about this kid,
including internal hospital emails stating we never intended to treat this child to begin with....i digress </span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">now, i don’t want any haters saying i don’t think the
homeless guy should get treated. in fact, i have bathed, fed, and medicated
more homeless guys than all of you added together so shut that shit right up.
what i am saying, is do you think our kids could receive the same care as
everyone else? just that, nothing more, nothing less, just the same?<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">i think so. but i don’t think it’s gonna happen until it
becomes logistically, financially and legally painful for some HCPBBP<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">not</b>
to<b style="mso-bidi-font-weight: normal;"> </b>do it. and that’s where we come
in. enter left.....a couple thousand autism parents that carve out 15 minutes a
day reading time to focus on their legal rights related to health care and what
to do about them when they are violated.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">let’s just go there together. ready? close your eyes and
take a deep breath.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">we are in the
emergency room together. your kid has a high fever and he is posturing like no
tomorrow, covered in a rash, he just puked all over the car on the way...ya
know...a typical saturday. what, you say?!? you don’t have an ipad with an app
for my child to use to communicate with you? you don’t have any pecs? you can’t
provide him a means to communicate in the way he is accustomed to? <span style="mso-spacerun: yes;"> </span>ya know...like the federal mandate of the
americans with disabilities act says you should? ya know...like the joint
commission says he has a right to?! like.......o m geeee , well how are you
gonna assess his pain? what standardized pain assessment tool are you gonna
use? you’re not following the aap guidelines which are considered standard of
practice? you’re gonna deviate from standard of practice and open yourself up
to that whole legal liability...hell...what if my kid has a small bowel
obstruction that perforates? what if he’s having an appendicitis? can you tell
he’s not just by looking at him? wow...do you have x-ray vision? <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">tell you what, lemme give you the name of my attorney and
we’ll just wait here while you find someone who knows what the fuck they’re
doing<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">ahhhhhhhh.....come on back, now<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">doesn’t that feel better? <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">(long sip of wine)<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">here’s a few phrases i want to leave you with as you ponder
the possibilities. just think about it. all of us. together. </span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">1.5 million kids with autism<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">patient rights<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">civil rights<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">health care discrimination<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">class action<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">insurance companies<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">malpractice claims<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">insurance premiums<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">failure to diagnose<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">failure to treat<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">exacerbation of underlying condition<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">peace out<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">rubolino<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com0tag:blogger.com,1999:blog-4515966091782435722.post-26440724643169190562013-07-16T15:56:00.000-07:002013-07-17T09:48:35.373-07:00dear doctor<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">dear dr. gerberding,<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">when you accepted my friendship on facebook, i felt a sense of
excitement. an opportunity to tell you how i feel. while i’m fully aware that
my post will stay for only a short time before you rip it off your page...still...
a long awaited opportunity to share with you my inner feelings. <br />
i promise...i promise you that i will never go away. we know vaccines can and do
kill kids. they are also responsible for injuring and making ill, thousands and
thousands of children. you like to call it autism. we know you knew. you had a
responsibility to the children of this country and you sold them out...for greed...for
money...and for yourself. while you stepped over their dead and dying bodies to
climb the ladder, their parents, their families, their siblings sat by and
watched them suffer.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">while they had seizures that seemed to go on for far too
long, while their momma stay next to them, holding them, praying over them that
they will start to breathe again...you were out to dinner with some other slime
ball. while their daddy was up scrubbing the acid, liquid stool out of the
carpet at 3 a.m. while their momma washed their fire red rash and they suffered
in pain...you slept peacefully in your bed. <span style="mso-spacerun: yes;"> </span>while another family broken by stress,
watching their child suffer, devastated by the financial strain of being locked
out of the healthcare system worked their way through this unbelievable travesty...you
moved on. movin’ on up!! <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">and let’s not forget,the Poling case. let’s review……shall
we?<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="color: black; mso-bidi-font-family: Arial;"><br /><span style="font-family: "Courier New", Courier, monospace;">
<i style="mso-bidi-font-style: normal;">JULIE GERBERDING, DR., CDC DIRECTOR:
"Well, you know, I don't have all the facts because I still haven't been able to
review the case files myself. But my understanding is that the child has a --
what we think is a rare mitochondrial disorder. And children that have this
disease, anything that stresses them creates a situation where their cells just
can't make enough energy to keep their brains functioning normally. Now, we all
know that vaccines can occasionally cause fevers in kids. So if a child was
immunized, got a fever, had other complications from the vaccines. And if
you're predisposed with the mitochondrial disorder, it can certainly set off
some damage. Some of the symptoms can be symptoms that have characteristics of
autism</i>."<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Courier New", Courier, monospace;"><a href="http://transcripts.cnn.com/TRANSCRIPTS/0803/29/hcsg.01.html">http://transcripts.cnn.com/TRANSCRIPTS/0803/29/hcsg.01.html</a></span></i><br />
</div>
<span style="font-family: "Courier New", Courier, monospace;"></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; mso-layout-grid-align: none;">
<span style="font-family: "Courier New", Courier, monospace;">now……most people would
look at this and not like what you said. i, however, can appreciate a few items
in this short paragraph but still have a few questions. one……why didn’t you
review the case files? you had enough time and this issue was really big so...what
up gurl? fyi...mitochondrial disorders are not rare as we all know so why say
something that is such a stretch of the truth when trying to cover your
slime tracks? if you need some references, ask the AAP or review the latest
IACC transcripts….or better yet, check out the Kennedy Krieger paper that
states in the first line, “<span style="mso-bidi-font-family: TimesNewRomanPSMT;">Our
clinical experience at Kennedy Krieger Institute over the last 15 years has
shown that a deficiency of </span></span><span style="font-family: "Courier New", Courier, monospace;"><span style="mso-bidi-font-family: TimesNewRomanPSMT;">mitochondrial
complex I is a common cause of regressive autism.</span> ” but i know you’re
not interested in truths, or facts or real research.<span style="mso-spacerun: yes;"> </span>here’s another question….when you say “what
we think is a rare mitochondrial disorder”….who is we? are you grouping
yourself in with Hannah’s parents? or her doctors? or the DOJ? not sure what
you meant by that. and thanks for the super simple breakdown of mito
dysfunction for all us uneducated/undereducated parents out here….but try to be
accurate next time….mito doesn’t affect just the brain. then there’s my
favorite, how you elude to the vaccine causing a fever and the fever causing a
problem. should we then believe that certainly while a fever could cause
problems the vaccine itself is super duper safe and could never cause a
problem? the next phrase is where you redeem yourself…….”it can certainly set
off some damage”…..as in brain damage. then the infamous “symptoms characteristic
of autism” line that rang around the world. let’s see…..the kennedy krieger
paper doesn’t say characteristics, it says just plain autism, so i think you
need new reading glasses. there are many forms of brain damage, some caused by
vaccines, some caused by a repeated exposure to greedy, evil thoughts of
climbing the corrupt ladder of death and destruction. you, i would guess, have
the second kind. and it’s skewing your judgment if you think that you are going
to be exempt from judgment. i was thinking about what you could possibly do to
kind of undo all the damage you have done and…….quite frankly i couldn’t come
up with anything other than this. <o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">learn these words……i know you won’t be able to understand
them but just memorize them….you will need them later. just my words of advice….from
one “friend” to another…..<o:p></o:p></span></div>
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</span><br />
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<span lang="EN" style="color: #333333; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ansi-language: EN; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /><span style="font-family: "Courier New", Courier, monospace;">
A Psalm of David <br />
The LORD is my shepherd; I shall not want. <br />
He maketh me to lie down in green pastures: <br />
He leadeth me beside the still waters. <br />
He restoreth my soul: <br />
He leadeth me in the paths of righteousness for his name's sake. <br />
</span><span style="font-family: "Courier New", Courier, monospace;">Yea, though I walk through the valley of
the shadow of death, <br />
I will fear no evil: for thou art with me; <br />
Thy rod and thy staff they comfort me. <br />
Thou preparest a table before me in the presence of mine enemies: <br />
Thou anointest my head with oil; my cup runneth over. <br />
Surely goodness and mercy shall follow me all the days of my life: <br />
And I will dwell in the house of the LORD for ever.</span></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;">oh,and i forgot...you
should beg for forgiveness</span></span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;"></span></span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;">every....fucking....day<o:p></o:p></span></span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;">your fb friend<o:p></o:p></span></span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;">rubolino<o:p></o:p></span></span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
<span style="color: windowtext; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-family: "Courier New", Courier, monospace;">that’s J-I-L-L <span style="mso-spacerun: yes;"> </span>R-U-B-O-L-I-N-O</span></span><br />
<span style="font-family: Courier New;"></span><br />
<span style="color: white; font-family: Courier New;"></span><br />
<span style="font-family: "Courier New", Courier, monospace;">
</span>Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com1tag:blogger.com,1999:blog-4515966091782435722.post-52214084309245800152013-07-14T07:33:00.000-07:002013-07-17T09:48:19.352-07:00iacc......ick<br />
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<span style="font-family: "Courier New", Courier, monospace;">maiden voyage....our trip to give a whopping three minutes of
public comment at this past iacc meeting. as usual, we mistakenly thought we
should be nervous, until we got there. then we quickly realized, pretty much
nothing to be nervous about except maybe the possibility of jumping across the
table and throat punching someone until her airway collapsed. alas, we are not
murderers like some people in the room. pathetic was the response to the public
comments, some of them pleading for help. I think the fabulous Kelly Peters
sums it up with this fb post:<o:p></o:p></span></div>
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</span><br />
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<span class="usercontent2"><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">Let's objectively look at
objectives. Let's plan a meeting to plan the plan about the plans. Let's
regroup and recap and examine the reviewed data in four months. Let's schedule
a committee review about the separate meeting of the committee subgroups. Let's
re-evaluate the same shit we have blathered about for the past few years and
did nothing about.....</span></span></i></span><i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><br /><span style="font-family: "Courier New", Courier, monospace;">
<br />
<span class="usercontent2">Let's gather again and blow some more smoke up America’s
ass....<o:p></o:p></span></span></span></i></div>
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</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">two rays of light...Wendy Fournier and Lyn Redwood...thank
you for making us feel like, for a second, we weren’t sitting in the third ring
of hell by injecting some much needed reality into the day...and for your tireless
work. i couldn’t move forward without recognizing the unbelievable display of
restraint you both demonstrate and, in retrospect, the realization that all
along you have endured this gross display negligence while keeping your
commitment to the truth....and to our children....who are suffering. all i can
offer is my deepest thanks. and i’m sure there are some warriors out there that
are rolling their eyes right now mumbling the proverbial ‘this is just a normal
tuesday for us’ and looking down at our disgust for the status quo with a
judging ‘don’t you think we would have fixed this by now!?’ attitude. oh
well. if you wanna be a hater, stand in line bitches. if I lose any sleep over
your opinion of me, i’ll be sure to send you a frickin memo. until then,
realize that the travesty of justice is big enough for all of us. that whole
posturing within our community bullshit is just that, bullshit. spending my
life working with physicians whose egos were bigger than their frontal lobes
enables me to see past those who talk the talk but can’t walk the walk. look
around...at 1.5 million kids with autism, there’s enough more important shit to
talk about. hence, i digress. <o:p></o:p></span></span></span></div>
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</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">what can i say about Dr. Buie or Dr. Frye. please, for the
love of God, watch their presentations. for your own sake and the sake of your
children. they pretty much laid it out for everyone. our kids are sick and they
require medical treatment.if they get treated, they can and do get better. not
sure anyone was listening as they kept leaning over whispering to each other
about time, and how far behind the schedule was. we sat right behind insel not
on purpose but it turned out to be enlightening. especially when he would lean
over and make little comments like “she’s smart” or “makes sense” like he was
an actor in a pr campaign and it was the first time he’s ever heard of this
shit.<span style="mso-spacerun: yes;"> </span>i thought Jeanna was gonna unleash
her rugby playing self on his ass at any moment but thankfully she kept it to a
minimum and we spent the time texting each other how much we hated them and
writing notes on each other’s notepads.<o:p></o:p></span></span></span></div>
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</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">“which one is she?” <o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">“next to devil?”<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">“she’s a crack smoker”<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">my favorite…<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">“eat shit..AS..B..were just smirking”<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span class="usercontent2"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><span style="font-family: "Courier New", Courier, monospace;">the chic that talked about ect and catatonia....please
return to your hole in the universe. while i was forced to listen to your
disgusting presentation that took up way too much valuable time, we could have
been talking about children who suffer every minute of their lives in pain and
what to do about it. when you were asked a question and you went way over<span style="mso-spacerun: yes;"> </span>your time limit with your answer insisting on
explaining in even greater detail how important and pertinent your information
was and why you used pictures of children from a hundred years ago in your
power point, i wanted to stab myself in the iris to relieve the pain of
listening to someone as removed from reality as yourself. some kids just don’t
want to eat because they don’t want to and there’s nothing wrong with their
gastrointestinal systems? electroconvulsive therapy is not as barbaric as it
used to be? are you aware you are sitting next to Dr. Frye? the world’s leading
neurologist in treating autism? and across from Dr. Buie? who just gave an
extraordinary presentation on severe gastrointestinal<span style="mso-spacerun: yes;"> </span>disease in autism? just how stupid does a person
need to be to get money for research? please baby Jesus do not allow this
vermin to procreate. ect?……ECT!?!?!?! <span style="mso-spacerun: yes;"> </span>don’t even look at me, bitch, or i will fly
across this table and rip your scalp off.<o:p></o:p></span></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">at one point, after arriving late, insel left early because
his daughter just had her third baby. last<span style="mso-spacerun: yes;"> i</span> checked, grandpa doesn’t lactate so immediate duties would probably
just include indoctrination into the inner circle of evil. that poor kid, just
can’t choose what family you get stuck being born into. bottom line, the whole
thing was surreal. three minutes? wtf? but then again, that’s plenty of time to
say these words...”we’ve filed a petition in federal court”...or something
similar. i’m sure that’s not legally correct for those haters previously
referred to...aaaaaaand that’s because i’m not an attorney. aaaaand my
education wasn’t well rounded ivy league it was degenerate community college.
what i said in my three minutes i really meant. but you know how after an
argument with someone is over you think of really cool shit to say but you
can’t go back? here are mine...</span></div>
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</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">everyone on this bullshit committee knows vaccines cause
autism and that these kids are sick and you are all going to burn in hell for
all of eternity because you’re not doing a fucking thing about it</span></div>
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</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">if you are small enough to fit in my bag and have a history
of corruption and genocide against the children of this nation, probably not
a good idea to ride the elevator with me during lunch break<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">yes we just found out we could give public comment and you
better believe we will be back every time from now on to make your disgusting
existence as painful as possible for those 3 measly minutes<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">we can read so we will eventually figure out how to sue you
or put you in jail or make your life miserable trying to do both<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">our recovered, very capable kids will get older and be
extremely pissed off at you. they also have siblings that were neglected so
good luck with that</span></div>
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</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">nothing you do, say, don’t
do, don’t say, changes the fact that our kids are being denied access to the same health care as everyone else. that’s called
discrimination. and it’s discrimination against disabled individuals. and that,
my friends, is illegal.<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">next stop, congressional
hearing<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">i’m out<o:p></o:p></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Courier New", Courier, monospace;">rubolino<span style="color: white;"><o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com2tag:blogger.com,1999:blog-4515966091782435722.post-8787453848649911092013-07-11T23:34:00.000-07:002013-07-11T23:34:44.759-07:00<br />
<br />
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<span style="font-family: "Lucida Sans Typewriter"; font-size: 10pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">brand new....right out the box<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Lucida Sans Typewriter"; font-size: 10pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">you better hope you’re on the right side of truth if
you see your name in here<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Lucida Sans Typewriter"; font-size: 10pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">peace out<o:p></o:p></span></span></div>
<span style="font-family: "Courier New", Courier, monospace;">
</span><br />
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<span style="font-family: "Lucida Sans Typewriter"; font-size: 10pt; line-height: 115%;"><span style="font-family: "Courier New", Courier, monospace;">rubolino<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/03541603576237932283noreply@blogger.com0